guilt

The Other Side of Invisibility

Generally speaking, I’m not big into selfies. I prefer to take pics of my son and my dogs. That said, friends on social media will likely be familiar with the “progression of mediocre selfies” series; multiple attempts at family self-portraits taken during our adventures. Our crappy selfie skills have become a family punch line. But truth be told, I adore their candid silliness. 😊

For the last 18 months, I’ve been sick enough that I’ve largely disengaged from my previous everyday life. I don’t have to tell you all that, of course, because I’ve been absent here. Pain and fatigue are quite a tag team, as many of you know. They’ve largely limited my ability to write in complete sentences. But I’m slowly writing a post on my continuing pharmaceutical roulette, and I hope to feel well enough to get back to a more regular rhythm soon. I cannot thank you enough for sticking it out with me. 

At this point, you may be thinking “Girl, you weren’t kidding about not writing coherently. I mean, how do those two paragraphs even relate to each other?” But bear with me, because I took a mediocre selfie for this post. 

My selfie skills haven’t improved, but the caption says it all. When you’re chronically sick and mostly homebound, you can feel invisible. When everyone around you is racing to work, you can feel invisible. When your daily accomplishments include “got out of bed”, “slept for more than 3 hours straight”, or “made it to the doctor”, you can feel invisible. 

Much has been written about the frustration of the invisible chronic illness. But less is said about the invisibility we feel.  We are so often forced to the sidelines, as the world spins around us. So, this selfie proves, to me and to you, that I’m still here. Even without a job. Even without makeup. And it’s no accident that I’m holding a crochet project. If I take it slow and use the right tools, crochet is good exercise for my joints. It’s also a calming influence on my mind. I feel accomplished when I complete projects — in crochet, in the kitchen, or with my writing. And that’s crucial for my type-A personality. 

Is the feeling the same as closing a big deal or leading a strategy session with a business partner? As crossing a half-marathon finish line? As singing a solo in front of a crowd? Nope. But like my selfie, these hobbies remind me of where I am on life’s journey. They help me remember that I am here. And no matter what, I’m grateful for that. ✌️

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Heart To Heart Thoughts From Inside My Chronic Life

  • bedvsout-selfie

    The look changes. The diseases do not. On the left, in my natural habitat. On the right, after spending energy to “clean up”. Oh, and sunglasses hide a lot. 😉

    Rheumatoid Arthritis is one of 100+ types of arthritis.

  • But it’s also not “arthritis”, as I knew it pre-diagnosis.
  • Yes, it’s joint inflammation, immobility, and deformity.
  • But it is not cartilage degeneration, like osteoarthritis.
  • Which is common starting in middle age.
  • RA is an autoimmune disease.
  • This means my body is attacking itself.
  • Specifically, the lining of my joints.
  • RA can be systemic, which means it shows itself well beyond the joints.
  • My eyes, lungs, heart, and autonomic functions are all impacted.
  • And RA affects people in every age group.
  • Including over 300,000 kids in the US.
  • I’m always in pain. Like, 24/7.
  • But the fatigue, both from RA and fibromyalgia, is sometimes just as hard to handle.
  • My outward appearance generally doesn’t match how I feel.
  • I evaluate every task, every day, to determine whether to perform as normal, perform with modifications, or skip.
  • Yes, this includes showers, which zap my energy.
  • Some days, I can manage a short one in the evening before bed.
  • Some days, I can’t.
  • I contemplate my toothbrush twice a day.
  • Sometimes, I can’t manage the back and forth motion required for my manual brush.
  • Other times, the vibration of my electric toothbrush is unbearable.
  • This constant evaluation is mentally exhausting.
  • Fatigue does not mean “in need of a nap”.
  • It’s limb heaviness.
  • It’s brain fog.
  • It’s like having a bad flu, constantly.
  • At least once a day, I break down in tears because of the pain.
  • Pain keeps me from sleep 3-5 nights a week.
  • Opioids do not take it away.
  • Most days, they dull the pain.
  • And are necessary for me to function at all.
  • I use them in combination with other therapies and treatments.
  • So don’t be surprised if I smell like menthol.
  • It’s just the Bio-Freeze.
  • Medical marijuana is not legal where I live.
  • But it’s on the ballot again.
  • I’m scared that millions of chronic pain patients like me are getting lost.
  • While we debate the serious and separate issue of opioid addiction.
  • I have a permanent disabled parking permit.
  • Which I only use when I need it.
  • I have received angry stares and comments because I don’t “look” sick enough to have one.
  • If you have heard about a treatment, I have tried it.
  • Yes, this includes medications, alternative therapies, diets, protein shakes, vitamins, balms, and yoga.
  • Even if it worked for your mother/sister/uncle/grandpa/spouse/roommate, autoimmune disease affects everyone differently.
  • And though I use some of them, my diseases continue to be mostly unresponsive to treatment.
  • Save the unconditional love and support of my wife and son, a treatment that work wonders.
  • Despite all of these challenges, I try to stay positive, especially online.
  • I share photos of wonderful vacations I take with my wife and son.
  • But I don’t share the activities I skip to rest in bed.
  • Or the number of days I cannot even bear to get out of my pajamas.
  • The same goes for work, entertaining, date nights, soccer matches, and well, everything.
  • Many days, my bed is both my office and my dinner table.
  • And my computer and TV are my views to the outside world.
  • So I often feel apart and alone.
  • If I cancel plans we’ve made, it’s because I’m in really bad shape.
  • It is never because you are not important to me.
  • And it breaks my heart that you might think otherwise.
  • That you might stop inviting, stop calling, stop writing…
  • I want to do everything I could do before I was diagnosed.
  • But I can’t.
  • And resetting my own expectations is the hardest task of all.
  • I often feel guilty saying “no”.
  • I often feel like a failure when I can’t do what others can do.
  • Seven years in, I’m starting to accept that I need a different balance.
  • “No” allows me to be better in control of my chronic life.
  • So my disease no longer controls me.
  • It’s hard, and I’m far from perfect.
  • But no matter what comes, I plan on enjoying the hell out of this crazy, beautiful life.
  • As it is, not as I wish it was.
  • For as long as possible.

Thank you for listening. Namaste.

3 Things The Chronically Ill Wish Their Loved Ones Knew

Wanted to share this post from the amazing Toni Bernhard, author of the Turning Straw Into Gold column at Psychology Today and author of the brilliant How to Be Sick. If you are chronically ill, or love someone who is, please read her work. She’s amazing, as evidenced here:

http://www.psychologytoday.com/blog/turning-straw-gold/201405/3-things-the-chronically-ill-wish-their-loved-ones-knew

Just wow. As Lora can certainly tell you, I continue to struggle with all three of these, and as usual, Toni absolutely nails the discussion of every single one of them.  When I have these feelings, I try to acknowledge and accept them, then let them go, and focus on what I have today, versus what I have lost. The support and love of family, friends, and the RA/AI/chronically ill community helps tremendously as well.

I hope the wisdom in Toni’s post helps you know you’re not alone, and her writings guide you toward finding your own inner peace.